Drawn in by false hope

I was hesitant to even write about this experience, because who wants to admit it, but I wasted a lot of time and hope on something that I shouldn’t have. The reason I am telling you this is that if you are ill you have probably faced the same temptations I do, and maybe we can all learn something from my experience.

What exactly happened? I desparately want a cure, and I fell for the promise of one…

I have been looking for a doctor closer to home. Traveling to NYC, even if it is every two months, is a real pain. Also, the possibility of IV antibiotics had been raised at my last doctor’s visit, and I was concerned about having to increase my travel to every two or three weeks instead of every two months. I started looking around to see if there might be a doctor closer to whom who could manage this process if it came to that. Additionally, although my current doctor is considered to be one of the best LLMDs out there (which is why I am seeing him), he takes an approach that is solely allopathic, and I have been struggling to find a lyme literate alternative physician who could complement my current doctor.

Around this time, a doctor’s name came up who had previously been recommended to me by a contact here in Pittsburgh. That person is now 2 years out from any Lyme symptoms, and attributes her progress to him. I decided to look over his website. I had previously not considered him because he is IV heavy and I didn’t want IVs, but they were looking more and more likely … and when I looked over his site, I discovered that he is an integrative physician who has experience with alternative medicine. Not only that, he had actual statistics on his site saying that over 80% of his patients were cured with about sixty days of treatment! Not only that, but he took an evidence-based approach using a type of testing I had been told about but never used, PCR testing. The office was advised by a well-known LLMD.

This all sounded very good to me, and addressed several issues that I was concerned about. On the surface, an evidence-based approach where the success rate is tracked seems ideal. I didn’t dig further. I didn’t ask myself the questions from my  evaluating treatments post, I didn’t google the doctor, I didn’t ask the local support group that provides doctor recommendations, I just made an appointment.

When I got to the office, I was greeted by a friendly and well-organized staff. However, the doctor wore a suit and had his hair slicked back and came across as a salesman. He recommended I stop my current treatment … without knowing exactly when his treatment would be approved by my insurance company. He told me that the PCR testing was 5% accurate, so they tested 20 times to see if Lyme was present. Statistically speaking, if these are independent samples, 20 tests will still be very innacurate (accuracy is not additive). But he couldn’t explain clearly what the justification for 20 tests was, or why after 20 tests it would be possible to accurately judge whether or not someone was infected. His cure rate turned out to be from unpublished work of the doctor advising his clinic, and the numbers for his current patients were “about the same.” His office staff would not share the published research on which his protocol was based with me, they were worried that someone would copy the protocol if they shared too much information. When I later googled the office, I found that two doctors associated with the office (not the one I spoke with but others) had been involved in fraud of one kind or another.

Needless to say, and $400 later plus an unnecessary trip, I made the decision to stick with my current doctor. I am hopeful that this doctor has his heart in the right place, and I am sure that he is helping some people, but he was not for me. I have been asking myself ever since, where did I go wrong? What can I learn from this experience? One thing I failed to do is evaluate the treatment rigorously. Looking back at my previous post on this topic, I can say in retrospect:

  • Frequency data: Protocol only used by two doctors, one of whom is no longer in practice.
  • Process Data: None of this is clearly disclosed. Some concerns about how flexible this protocol is to the variability naturally present in patients.
  • Experience Data:
    • The primary doctor involved has only been treating for a couple of years.
    • The treatment is not being replicated, since the office chooses not to share it.
    • There is a patient who says it works, based on their personal experience being cured of Lyme. However, I don’t know much about the specifics of that person’s case, how easy it was, etc, and the base protocol (3 months of IV antibiotics) is pretty heavy duty and likely to be helpful in many cases.
  • Safety: As safe as IV antibiotics can be
  • Intuition & Emotion: This failed me, and that should have been a red flag. Everything I wanted to hear was there on the surface, and the very fact that it was so appealing was because it was being sold that way.
  • Practical Issues: This approach was costly. The clinic claimed my insurance wouldn’t pay and that it would cost me $13,000. It turns out that my insurance would in fact pay (an honest mistake by the staff at this office, as it took some digging for me to verify that). However even with that, travelling every 10 days (even if not as far as NY) was a real issue with the teratment.  Additionally, it would have been a wholesale switch of treatment, with no management during the gap in treatment or even acknowledgement that a gap might have dangers or that my current treatment protocol might be doing something.

Not all of this would have been obvious without visiting the clinic. I could have perhaps found out more up front and avoided all of this, but in the end it was a valuable learning experience. My mistake was to believe that a simple, straightforward cure was possible. When I reached the conclusion that I could not work with this office, I was sad to give that hope up. Instead, I will keep hoping for, and working toward, a more difficult path and promising path to health.

3 thoughts on “Drawn in by false hope

  1. So sorry you had to go through this. It will help you I am sure with future research on where to get the help you need. Lyme treatment is definnitely a marathon…more like a triathalon with stops and starts, changes, adjustments, grueling effort, and the finish line so far away.
    Thanks for sharing this as it will help me and I am sure others on their own journey.

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